Posts Tagged deafness

Island paradises are wonderful, but after a few days I find usually myself restless. Exploring a place suits me more than lying on a beach.

Seemingly a lifetime ago now[2] I visited the popular Indonesia holiday destination Bali not to lie about on a beachchair or try the nightlife, but to meet the deaf people of the small village Bengkala or, as they say in Indonesia, Desa Bengkala.

I’d learnt of the place obliquely, stumbling upon it while reading scientific papers.

Browsing a journal I rarely read—and whose title I’ve long forgotten—I encountered a striking summary for a research paper.[3]

It read more like anthropology than genetics, an account of how an isolated village had developed a high occurrence of hereditary deafness that had persisted for over seven generations and how villagers, deaf and hearing alike, could communicate in a sign language they had developed.

Some time ago I tried to gather articles to offer as a carnival on disability in science. I put quite a bit effort into finding material, but got few offers. It was a project I had wanted to do for some time and the lack of response was very disappointing. I had thought it was a topic people would want to front up and share, but perhaps people don’t.

As a slight compensation of sorts I’ve collected a small number of articles related to deafness below. A few further articles of my own are listed at the end of this piece.

Throughout the world there are many different sign languages. These are quite capable for everyday language, but struggle in specialist domains like science. It’s doubly tricky as there is a natural tendency for local sign to develop for particular terms, rather than scientific signs being international, in the way that the print terms and units of measure are.

Finger-spelling and spatially placing a word for later reference is a passable solution in some conversations, but it’s also very limiting.

The New York Times article describes attempts to crowd-source common signs for terms.

Personal experiences and advice/suggestions

Mosaic of Minds has a post suggesting how to better talk to people with hearing loss or auditory processing problems and why do it that way. I’d encourage anyone to read it – I’ve always been of the opinion that some of the advice to better communicate with the hard-of-hearing is just good advice to communicate at all.

The placement of the speaker can make a difference. Back lighting — where there is bright light behind you — makes you hard to lip-read. The listener’s eyes will naturally adapt to the bright light, leaving your face hard to see. Similarly, noise behind the speaker is particularly troublesome. Modern hearing aids usually come with a ‘directional’ mode that favours sound from in front of the listener. While that helps downplay noise to one side and behind the listener, noise behind the speaker is still and issue. Echo also can be nuisance – shiny walls and floors can be clues a place will have echo.

One writer who responded instantly with cheerful enthusiasm to my call for articles was Jaipreet Virdi. I asked her directly as I’ve long been a fan of her blog, From The Hands of Quacks. Below are the articles she suggested.

There’s some wonderful historic quotes in From the Hands of Quacks (great title too). She writes infrequently, but very well. In addition to the recent quips it’s worth reading her account of a complaint in April 1839 by Joseph Toynbee warning Lancet readers of (Toynbee’s words) ’quack curers for the deaf’,

’[H]e sends his advertisement to the public papers,’ Toynbee wrote, ’for an enormous payment gets it inserted as a paragraph…[and] by the aid of the circulation of this puff…deaf people consult Dr. Turnbull; he makes his application, and takes his fee.’[4] Toynbee insisted this was a disgraceful and underhanded maneuver directed towards drawing in patients, who were left vulnerable to potentially dangerous treatments […]

The World Health Organisation (WHO) has released its first ever world report on disability, available free as a PDF file. It’s big document–299 pages excluding the glossary and index–so some of you may prefer their shorter report sheet (PDF file).

I have to admit I was a little surprised to learn that it’s the first report. NaÃ¯vely I’d have thought that an international report on disability would be something that occurred in an established periodic fashion.

As an idealistic newly minted Ph.D. graduate I pitched the idea of collating the resources offering assistance to the deaf on the Indian subcontinent as a kind of working holiday. I’d plans to travel there and looking for people to visit I thought I’d be able to drop in on deaf group in India. Looking up resources listing deaf groups and organisations around the world, I found that the Indian subcontinent wasn’t represented at the time, which gave me the seed of the idea. It never came to pass. Youthful idealism is like that. But looking at the scope of this document things have clearly moved on to better awareness of the situation of the disabled outside of Western countries.

This report attempts to present a global picture of disabilities and offer some general recommendations for a national and international level, and look at each of the elements that could be addressed. Professor Stephen Hawking providing the opening introduction. Interestingly, along with the contributors, the documents lists and extensive list of peer-reviewers. Read the rest of this entry »

In New Zealand reports of whales stranding on the beaches make headlines, such as the recent stranding of pilot whales at Spirits Bay.[1] They’re mammals like us and New Zealanders have grown up with news stories of whales and their inquisitive cousins, dolphins. It’s pitiful to see these creatures sprawled helpless on the sand.

Frequent readers will know that I have an interest in deafness-related issues, so while not knowing a lot about these mammals that swim in our waters I was intrigued by a recent paper in Public LIbrary of Science exploring the idea that dolphins that beach might be suffering hearing losses.

Like most New Zealanders I’ve seen whales and dolphins in open waters at first hand.

My encounters with dolphins and, less often, whales have been from boats. Dolphins love to play in the pressured water of the bow wave of a moving boat. It’s great fun to lie at the bow looking at them swim and leap a few metres away from you.

As a child, I saw a killer whale closer than I’d like in a small yacht,[2] which was a little unsettling with their reputation as a hunter. As an adult I recall standing at the stern of a cruising yacht, probably about 28 foot in length (~8.5m), off the Kaikoura coast and seeing the fluke of a large whale off the stern. Another crew member at the same time reported a whale sighting ahead of the bow – the same whale as it turned out. The size of the larger species is impressive when seen up-close.

Dolphins and whales use echolocation to sense objects for navigation and foraging for food. They reasoned if they were deafened it might explain some of the beachings and embarked on testing the hearing of recently beached dolphins.

David Mann and his colleagues from Florida and the Netherlands investigated if beached dolphins in Florida were deaf. Read the rest of this entry »

Two recent studies independently report mutations in the otoferlin (OTOF) gene are the cause of a rare temporary hearing loss caused by a high body temperature.

I have a hearing loss, and if I spot research on deafness when updating papers for my own research (see Footnote of previous post) I often take a peek.

Tonight I learnt that some people have deafness that is dependent on their body temperature, with a high temperature (say, a fever) inducing deafness. They recover some time after their body temperature has returned to normal.

In some ways it’s quite quirky, but knowing how molecules interact I can imagine how this might be possible.

The study I ran into was a Chinese study examining a collection of 73 Han Chinese patients with auditory neuropathy*. During this study, they uncovered a case of temperature-dependent hearing loss:

However, his hearing was affected by a slight change of body temperature. His mother found that his hearing in the morning is generally better than in the afternoon, and temperature measurements showed that his body temperature in the afternoon was generally 0.1-0.6˚ [˚C?] higher than that in the morning.

They tested his hearing loss, raising his body temperature during an extended hospital visit and found that

When his body temperature rose above 36.5°C, the boy’s hearing loss was severe (70-80dB HL) and this symptom could last for a whole day.

In communication not only does the message matter, but how you convey it.

’Dear’

You have to admit the Air New Zealand PR/communications people are original in how they choose to communicate their messages. We’ve seen their ’bare essentials’ advertisements and safety video.

Sometimes people disagree with what an editorial says.

Air New Zealand has chosen to reply to an editorial in the Listener magazine in New Zealand Sign Language (NZSL), both as a video* and a page of finger-spelling in the Dominion Post. (Both of which takes ages to load unfortunately.)

If you’re wanting to translate the finger-spelled page you could use memorise this chart from the van Asch Deaf Education Centre but it’d be simpler for most to watch the video, which has subtitles. If you are trying to learn finger-spelling for the first time (do try!), it will help to notice that the vowels are indicated by touching the digits of the open hand in order A-E-I-O-U (thumb to little finger) and that the consonants resemble their letters. Try it on the graphics in this page.

On occasion I write about disability-related issues. I’d like to briefly step aside from science and share my reaction to a recent announcement that deaf people in New Zealand will soon be able to text emergency calls, reported in an article from The Dominion Post by Claire McEntee.

My initial reaction was surprise that it hasn’t been possible until now. I’d always assumed that you could text to the emergency number (111 in New Zealand). It had never occurred to me that you couldn’t.

I’ve learnt that there are emergency text numbers for deaf people in a number of countries but in these arrangements, the number differs from the national emergency number, whereas the new service in NZ is to use the national emergency number.

For example, individualpoliceservices in the UK are advertise texting services, but using local numbers for each region. More recently British emergency services have been testing a national texting service using their national emergency number, 999.

Regardless of the issues of priority (who came first) and the fiddly details of how each service works, this news is good to see. See, not hear.

Claire McEntee, at the Dominion Post, tells us this new service is to be a registered-user only affair: deaf users will have to subscribe viaDeaf Aotearoa New Zealand (DANZ, formerly the Deaf Association; for overseas readers: Aotearoa is the Maori name for New Zealand and translates as ’land of the long white cloud’).

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